Tribute to Amy by Robin Erb – Detroit Free Press Medical Writer

9052012

Amy Rauch Neilson redefined the word “battle.”

When it comes to cancer, that word is often overused and exaggerated. Most people do what the doctors tell them and hope and pray for the best.

Not Neilson. The Belleville writer and mother of a frog-loving little boy named Theo would have none of that. She died Sunday at 43, but not before a public knock-down, drag-out fight with the cancer-causing genetic mutation, BRCA1.

But the chromosomal misprint threaded through the Rauch family predisposes carriers to cancer, especially breast and ovarian. It most likely killed her mother and grandmother. For carriers of the BRCA1 and BRCA2 mutation and their loved ones, life’s decisions — marriage, children, jobs and health insurance — become painful considerations of mortality.

Rauch Neilson asked doctors after her 2006 treatment to slice away her ovaries and breasts. Her reasoning: Take away cancer’s real estate so it can’t return.

But in January 2011, relaxed and warming herself by the fireplace after a winter romp outside with her husband, Don Neilson, and son, Theo, she found another lump — this one grape-sized — wedged between her breast implant and skin.

“She was devastated by the second diagnosis,” said longtime friend Kristi Kahl, 43.

Frustrated and angry, she ran into the snowy winter blackness one night soon after the diagnosis, Rauch Neilson told the Free Press last year. Outside the family home on Edison Lake, she glared skyward to where God might be: “Are you kidding me? Are you kidding me?” she screamed.

Then she turned to her writing.

“Since I was 8 years old, I knew I was a writer. I followed a very predictable path to realizing my dream,” she wrote. “But all this time, I tried to deny what I knew was a big part of what I’d been put on this Earth to do — provide as much real, no-holds-barred information for women with breast cancer, and in particular, those who carry the BRCA1 or BRCA2 breast cancer genes — as I could.”

Loved ones and strangers read of Rauch Neilson’s lonely and tear-filled moments, but also everyday pleasures — watching Theo hang bulbs on the Christmas tree, a ride on a tractor with her husband on a chilly winter day and gluing glitter on a pair of black pumps with a friend for a Bras for a Cause fund-raiser.

In person and online, she was “uplifting and funky (and) passionate about everything,” Kahl said.

Whether at cancer awareness events, at the grocery story or on family vacations, Rauch Neilson became a walking dictionary for anyone who would listen to information about cancer-fighting foods, clinical trials and phrases such as “PARP inhibitors” and “lymphocytes.”

She posted new research and news stories on her blog for others diagnosed with cancer.

“First and foremost, she wanted to beat this for her son,” said Dr. Dana Zakalik, Rauch Neilson’s oncologist at Beaumont Hospital in Royal Oak. “But she also wanted to be an example and inspiration for other patients. She attacked this with great enthusiasm, great optimism and great belief.”

By December, the cancer had spread to her bones. Rauch Neilson joined friends and loved ones at a local park, where they set sky lanterns in her honor.

Now, family and friends will work to get a book published about her cancer. She finished it in the fall and had been in the process of organizing its chapters and getting it edited, Kahl said.

For now, her husband said his focus is Theo, who sat with his mom in the hospital room two weeks ago, in the quiet after doctors delivered the news: There would be no more treatment.

It was his wife who best prepared Theo to continue to live and love, Don Neilson said.

“She was a wonderful, loving mom and a wonderful, loving wife,” he said. “Her blog was about breast cancer, but she didn’t let that be who she was.”

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8 responses

I, too, only knew Amy through her blog and became fasinated with her writing and her life. I got a hot flash in the pit of my stomach when I heard of Amy’s passing last week. Her family continues to be in my prayers.

Amy’s passing is not a reality for me. She was just too vital and sparkling, not to still be around. But I know in my heart that she is with God now, and my prayers are constant for Don and Theo. Love always, Mom Reet

So very sorry to hear of Amy’s passing. She bore her struggle with such elegance. Her love for Theo and Don were so evident in her writing. Theo has a treasure from his Mom, in all her beautiful words, and her talented way of expressing her struggle. God Bless all of you, Adrienne

I live across the lake from Don, Amy and Theo. My wife and I became instant friends with them after we met over a decade ago. Swimming together in the summer, our “Winter Blast” party in the winter and sledding on the famous almost Olympic caliber sled run. We will miss having last minute BBQ’s with her, laughs and her friendship. A lot of of good times were shared over the years, but I must share a really funny funny story. After Amy’s breast reconstruction surgery she kept saying….do you want to see them? Well, one day I swam across the lake for a visit which ended up with a invite for dinner (looking out for me while my family was in France making sure I ate) she proposed the question again…..want to see them? I said what most men would say for probably the 10th time, YES. She looked at Don and said, do you mind? He said ” no, I ” and when I turned my head back, yep, you guessed it. Her shirt was up to her chin. We carried on a conversation about how they were made shirt up the whole time. Was she outgoing…you betcha! I will miss her dearly. Mark

I met Amy at last year’s Bras for a Cause show, and only knew her briefly, but she helped me overcome stagefright by offering several tips and pointers; she was a great source of inspiration! Although she will be missed by many, we were all blessed to have had such a wonderful Angel touch our lives. Our prayers go out to Amy’s family and friends.